Alzheimer's Foundation of America Programs and Services

Advocacy

Thanks to advocates like you, there is greater awareness of Alzheimer’s disease and related dementias among our nation’s policymakers. While the need remains acute and a cure for Alzheimer’s disease elusive, some significant strides are being made. The past couple years have seen modest increases in Alzheimer’s disease research funding at the National Institutes of Health (NIH) along with implementation of the BRAIN Initiative, which will help researchers unlock the mysteries of the brain, including dementia. We need to continue to speak out and build upon this progress. By being diligent and focused in our mission, we will ultimately get to a cure or modifying treatment by the 2025 target established by the National Plan to Address Alzheimer’s Disease.

The Alzheimer’s Foundation of America (AFA) continues to be a strong voice for people living with dementia and for their family caregivers. The following recaps several of AFA’s policy initiatives during the first half of 2015:

2016 Federal Budget – There has been a growing chorus—by policy makers on both sides of the aisle—for an increase in Alzheimer’s disease research funding. In December 2014, Congress approved a budget that included an additional $25 million at NIH’s National Institute on Aging, bringing total spending for Alzheimer’s disease research to $587 million in the current fiscal year.

For FY’16, AFA has called for an increase of $500 million for Alzheimer’s disease at NIH. The President’s budget, released in February, has a $51 million increase for research at NIH and funding for the Administration on Community Living (ACL), which implements Older Americans Act (OAA) programs that support family caregivers, also received a modest funding increase.

Congressional appropriators have responded to this need. The House Appropriations Committee has approved a budget for FY ’16 which includes a $300 million increase for federal research funding for Alzheimer’s disease and the Senate Appropriations Committee calls for $350 million more for Alzheimer’s disease in FY ’16. Currently, the federal government spends approximately $580 million for Alzheimer’s disease research. Budget negotiations, however, are far from over. AFA urges all stakeholders to contact their Congressional delegation and urge them to ensure that this increase for Alzheimer’s disease funding is part of the final budget package for FY ’16.

Reauthorization of the Older Americans Act – This year marks the 50th anniversary of Older Americans Act (OAA). OAA programs include Alzheimer’s disease education, adult day services, caregiver training, senior nutritional services, and legal assistance—aimed at helping to alleviate some of the physical, financial and emotional toll of Alzheimer’s disease. OAA has not been authorized since 2011. Without reauthorization, OAA programs will be subject to yearly budget requests and fluctuations in funding.

The Senate has approved S.192, the 2016 reauthorization of the OAA. The bill updates and strengthens current OAA programs including: dementia caregiver training programs, Meals on Wheels and state grants subsidizing adult day care.

Action now shifts to the House, where an OAA reauthorization measure has yet to be introduced. AFA will continue to follow the progress toward reauthorization of this important legislation and will provide updates as they are available.

2015 Update of the “National Plan to Address Alzheimer’s Disease” - In conjunction with the White House Conference on Aging, HHS released the 2015 update to the National Plan to Address Alzheimer’s Disease. The update includes HHS’ Administration on Community Living launching a $4 million Brain Health Awareness Campaign to help older adults better understand changes that occur in the brain. In addition, the Dementia Friendly America Initiative was announced and will expand to 15 pilot sites across the country. The initiative is based on Minnesota’s ACT on Alzheimer’s program where 34 communities across the state work to increase dementia awareness and implement strategies to support individuals living with Alzheimer’s disease and their family caregivers.

Lastly, HHS released the Alzheimer’s and Related Dementias: HIPAA Resource List which gives guidance to providers regarding consent, capacity, and decision making when treating individuals with dementia.

AFA suggested several action steps for inclusion in the 2015 update, including increasing engagement and coordination with global partners to combat Alzheimer's disease; supporting partnerships between individual states and the Council; and partnering with state entities to ensure full access to long-term care and services for people with dementia. AFA also recommended that the Council expand opportunities for memory screening and to call on Congress to "double down" on federal funding for Alzheimer's disease research.

2015 White House Conference on Aging – The White House Conference on Aging (WHCoA) was held on July 13th and marked the 50th anniversary of Medicare, Medicaid, and the Older Americans Act, as well as the 80th anniversary of Social Security. At the conference, advocate and policy makers heard from panelists discussing caregiving, financial security, elder justice, intergeneration connections and technology in an effort to start a discussion on what it is like to be aging in our society.

The conference also featured an address from President Obama. In his speech, the President noted that 10,000 Americans are turning 65 every day and many have not done enough to prepare for retirement. He announced that the Department of Labor would be revising rules to help states set up retirement savings accounts. Other announcements made by the Administration at the WHCoA include an update to the national Alzheimer’s plan (see separate article); launching aging.gov; and modernizing rules that affect long term care, healthy aging and elder justice.

In the months leading up to the July event, the WHCoA collected input and feedback about aging policy at five regional meetings throughout the country. In comments to the WHCoA, AFA called for reforming public policy surrounding dementia and family caregivers by: lifting eligibility restrictions on some current Medicare benefits to allow greater access to home care aide services; funding for existing support programs under the OAA; providing incentives for financing individuals’ long-term care needs; fostering technology to help monitor vulnerable populations that will allow them to safely age in place; increase opportunities and access to cognitive screenings and establishing tax reforms to help families mitigate the costs of caregiving.

21st Century Cures Initiative - The House has approved legislation (H.R.6) that reforms the drug development process and looks at ways to accelerate the pace of cures in America. The legislation included provisions that would: 1)incorporate patient perspectives into the regulatory process and help address their unmet medical needs; 2)build the foundation for 21st century medicine; 3)streamline clinical trials; 4)support continued innovation at our federal public health agencies; and 5)modernize medical product regulation.

In comments on the developing legislation, AFA noted support of the bill’s emphasis on “putting patients first” and the active inclusion of persons with chronic disease, including people living with dementia and their family caregivers, at all points in the decision making process. AFA also supports additional measures in the legislation which provide for better advances in computerized neuro-cognitive and brain-disease analyses, expanded access to investigative treatments and modernization of the regulation of social media to facilitate responsible communication of medical and scientific developments.

Senate Special Committee on Aging – The Senate Special Committee on Aging held a hearing, entitled: “The Fight Against Alzheimer's Disease: Are We on Track to a Treatment by 2025?" Witnesses included former model and restaurateur, B. Smith, who has early onset Alzheimer's disease and her husband and caregiver, Dan Gasby. In testimony presented with his wife at his side, Gasby noted the higher incidence of Alzheimer's disease in the African American community and said that Congress needs to do more to address this disparity. Other panelists discussed the implementation of the national plan, the current state of Alzheimer's disease research and the impact of the disease on family caregivers.

In written testimony, AFA called on Congress "to do its part to ensure sufficient resources are appropriated if we are going to achieve the lofty, but attainable, goal of making real progress in eradicating this devastating brain disorder and developing a cure or meaningful treatment by 2025."

Other legislation supported by the AFA in the 114th Congress includes:

S.Res.74/H.Res.237 - A resolution, introduced by Sen. Susan Collins (R-ME) in the Senate and Reps. Chris Smith (R-NJ) and Maxine Waters (D-CA), declaring that achieving the primary goal of the National Plan to Address Alzheimer's Disease, to prevent and effectively treat Alzheimer's disease by 2025, is an urgent national priority. In addition, the resolution in the Senate calls for an additional $500 million in Alzheimer’s disease research in fiscal year (FY) 2016 with a pathway to $2 billion in total research funding for Alzheimer’s disease in FY ’20.

S.192 - Reauthorization of the Older Americans Act (OAA), introduced by Sens. Lamar Alexander (R-TN) and Bernie Sanders (D-VT) provides grants to states for community planning and social services, research and development projects, and personnel training in the field of aging.

S.857/H.R.1559 - the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act, introduced by Sen. Debbie Stabenow (D-MI) in the Senate and Rep. Chis Smith (R-NJ) in the House, will provide Medicare coverage for comprehensive care planning services—for both the individual and his/her caregiver—following a dementia diagnosis. Providers would be required to document the diagnosis and care planning services in the individual’s medical record. The federal government would conduct outreach to providers to educate them about the new benefit.

S 1549 - the Care Planning Act, introduced by Sens. Johnny Isakson (R-GA) and Mark Warner (D-VA), creates a new Medicare benefit for those with chronic illness, including Alzheimer’s disease. The Care Planning benefit would include team-based discussion of goals of care and values, explanation of disease progression, exploration of a relevant range of treatment options, and a documented care plan that reflects the individual’s goals, values, and preferences.

H.R. 3090 - the Alzheimer’s Caregiver Support Act, introduced by Reps. Chris Smith (R-NJ) and Maxine Waters (D-CA) authorizes grants to public and non-profit organizations to expand training and support services for families and caregivers of patients with Alzheimer’s disease.

H.R. 3091 - the Missing Alzheimer’s Disease Patient Alert Program Reauthorization Act introduced by Reps. Chris Smith (R-NJ) and Maxine Waters (D-CA), reauthorizes a Department of Justice program that helps local communities and law enforcement officials quickly identify persons with Alzheimer’s disease who wander away from their homes and reunite them with their families. This program saves law enforcement officials valuable time and allows them to focus on other security concerns. It also reduces injuries and deaths among Alzheimer’s patients, and it brings peace of mind to their families.

H.R. 3092 - the Alzheimer’s Disease Semipostal Stamp Act, introduced by Reps. Chris Smith (R-NJ) and Maxine Waters (D-CA), requires the U.S. Postal Service to issue and sell a semipostal stamp, with the proceeds helping to fund Alzheimer’s research at the National Institutes of Health. This bill will raise public awareness about Alzheimer’s and encourage concerned individuals to get involved and make voluntary contributions to Alzheimer’s research efforts. The bill is modeled on the popular and successful Breast Cancer Research Semipostal Stamp.

S. 1979/H.R. 3099 - the Recognize, Assist, Include, and Engage (RAISE) Act introduced by Sens. Susan Collins (R-ME) and Tammy Baldwin (D-WI) along with Reps. Greg Harper (R-MS) and Kathy Castor (D-FL) calls for creating an integrated national strategy to recognize and support family caregivers. Specifically the bill creates an advisory board, modeled on the advisory board established under the National Alzheimer's Project Act, to advise and make recommendations to shape a national family caregiver strategy.